Advocating for MS in the State Capitol

I had an amazing opportunity this week to advocate for people living with Multiple Sclerosis. It all started a few months back when I told one of my best friends that the company I work for gives every employee five paid days to volunteer each year. (Something more companies should do.) My best friend is the Advocacy Director for the National Multiple Sclerosis Society serving New York State and Vermont. Part of her job is to give people living with MS the tools they need to be advocates. So I told my best friend that I have 5 volunteer days that my company gives me and I may as well use them and the MS Society is definitely a cause I support. My best friend invited me to join her team when they spent the day at the New York State Capitol advocating for several issues that affect MS patients.

I have several friends who live with MS as well as a few distant family members that had MS but I never realized how little I knew about the disease. Some of the things I learned included:

The cost of medicine is astronomical and ridiculous. A medicine that has been on the market for 20 years that was $8,000 thr year when it came out now costs over $80,000 a year. So if someone needs this medicine and has a 20% coinsurance payment, they have to pay over $16,000 a year for the medicine. I don’t know how it is reasonable to expect a middle class or lower class person to be able to afford that. One of the people advocating said that they knew a middle aged person who had to move back in with their elderly parents because they couldn’t afford to live on their own and pay for their medication. I remember complaining when the copay for my albuterol inhaler went from $20 to $40 and this is a harsh reality check.

The lack of transparency from insurance companies can make it difficult for MS patients to be able to choose treatment. Sometimes a drug may lose its effectiveness or require some trial and error but it’s hard for a patient to make that change if they can’t get a clear answer from their insurance company as to how much the out of pocket expense is going to be.

MS patients don’t get to choose if they receive their drugs through the mail or at a local pharmacy. Their insurance company makes that decision. Some people like to get their drugs in the mail and it works out great but for other people it doesn’t work. Sometimes the drugs are stolen and since they are expensive, the mail order pharmacy may be hesitant to resend them (it’s not Amazon.com who will usually resend an item that doesn’t show up). An MS patient usually has to jump through hoops to get the medication they need and any gap in medication coverage can cause big problems in their treatment.

I learned so much during this day. In addition to learning about MS, I learned about the process of meeting with legislators and discussing issues and seeing how change could happen. I was in awe of my best friend as she would talk to the legislators or their representatives. It was amazing to see her in action. My fun-loving friend got down to business! I was also in awe of the MS patients who bravely told their stories to help themselves and others afflicted by the disease. At first I felt a little self conscious because I was “just a volunteer” when everyone else was an employee or they were living with MS but everyone welcomed me to the team. And they answered my stupid questions too without making me feel stupid.

When Bryon was in the ICU, I had to learn very quickly how to advocate for him. It does not matter how good the hospital is, one must stay on top of what the doctors are doing and saying. I think the struggles I had are the same struggles that others have regardless of illness. One of the things that always seemed to concern me was that the different teams of doctors didn’t seem to communicate and I heard that was also the case with MS patients. MS patients have to see neurologists that specialize in MS and if they see another type of doctor, it is imperative that that doctor communicate with their neurologist because what might be a standard treatment for a healthy person may cause serious complications to a MS patient.

While a patient (or their family as was my case) should always be aware of what is going on, I know it was exhausting to have to stay on top of the doctors to make sure they had the correct up-to-date information. But I had to do it. I have a background in healthcare since my profession is in Oncology data but I can’t imagine how much harder it must be for patients and family members who do not have a background in healthcare. Bryon could not advocate for himself and my heart breaks for the patients who don’t have family members who work in healthcare and don’t understand healthcare jargon. I can’t imagine how lost they must feel.

After this experience, working to make sure patients and patients families have to tools to advocate for themselves is important to me. I don’t want anyone to feel like they were hit by a steamroller like I was. I hope I get more opportunities in the future to advocate for patients and their families and I thank my friends at the MS Society of New York for this including me.